Sunday, December 20, 2009

Two Miracles



I'm a scientist. I don't believe in miracles. They are impossible. However, twice this year I have been presented with an event so improbable and yet so undeniable that my logical, analytic brain staggered as if knocked out in a WWE Smackdown. My brain still cannot explain away these, what shall I call them, great, unexpected gifts? (None of my terminology seems to be correct. We like to say that the probability of an event is "vanishingly small," for example, if the probability of occurrence is so small as to be as close to impossible as it is possible to get without actually being impossible. Science inserts precise terminology into fuzzy discourse so that we are all forced to talk about things we don't understand with words we do understand. I remain at a loss for words.)

You all know about the first miracle: love at the end of life. Ivonne and I have been married since early September. I laugh when I get calls from old friends, who somehow manage to ask me, ever so carefully, how my marriage is going, as if expecting me to say, OMG, I've made a terrible mistake, what on earth am I to do!

It was no mistake. The love deepens. It is real. I have a wife, I am a husband. I am enjoying every day of it, and I am taking on my responsibilities as a new step-father with careful gusto. I know there are no fools like old fools, but if you've been following my blog, you know that my mind cannot ignore negative evidence even when it is telling me that there is no hope and I am going to die soon. The chances of my being fooled either by her or by myself for very long are, indeed, vanishingly small.

On the other hand, my friends and her relatives have had a problem absorbing this miracle. I've had to shake them awake because I really don't know how much time I have left and it is of critical importance to me that those who have known and cared for me the longest understand that this marriage is real and beautiful, and that I want them to see this for themselves so that they will believe it and, if necessary, help Ivonne when I lose the battle against myeloma. So one by one, friend by friend, I persuade them. Not of the reality that I have made a great marriage, but persuade them to act quickly to find out for themselves.

I reached a milestone of acceptance with Ivonne's family not long ago. The Mexican family is the most important structure I've found in Mexico. I have enormous respect and admiration, even envy, for how it works. In something else I must write about before too long, they have moved heaven and earth to make it possible for Ivonne to come to America to be with me despite the best efforts of my government to prevent us from being together. On the other hand, they have variations of the same problems as my old friends. Is this on the up-and-up? Is it even possible that this relationship is real and honorable? It can't be! Is a pathetic old man paying for sex but can't stand the guilt so decides to marry? What is going on in Ivonne's mind? Is it for the money?



I confess the familia de Ivonne Guerrero Garibay is far too complicated and enormous for me to understand how it works, but I do know that Ivonne's uncle, tio Jesus, is important. I had never met him. He was not seen on the trip to Mexico I took to meet her father and the children. He skipped the wedding. There has been zero communication. Yet he lives next to Ivonne's father and is active every day in taking care of her children.

So first, I decided on a wedding gift for Ivonne's father that would get attention. Not because it was terribly expensive, but because, I hoped, it would be deeply thoughtful. It would send the message that I care about having a good relationship with him.

During the visit to Mexico when I met him, he brought out his Spanish guitar to play and sing for me. I had to encourage him at one point by asking to play a little for him, and then tried to resurrect some three-finger folk blues from which, for a few summers, I earned a living. But the guitar really was so old and beaten up as to be unplayable. Bent neck, missing fretboard pieces, permanent capo to help with the tuning, a mess.

But I'm a musician myself, and although he was trying to play show pieces and sing American standards (like My Way, which I loathe), I could tell even without his being in practice and with his unplayable guitar that he had been very, very good. He used to sing for money in Mexico for Mexicans, who seem to be a lot more critical about their music than as a rule we are about ours. He (and Ivonne) know everything there is to know about every mariachi song since they were first sung. True experts on the tunes and the words, they can probably play and sing all of them expertly. Awesome.

I also saw a bit of tragedy. This impressive musician without an instrument and out of practice! I have little knowledge of why, in his old age, he's stuck this horrible guitar, but from that moment on I knew this was a problem to fix. I just needed the opportunity.

And, then, came the wedding. And the tradition of giving a gift. Ole!

I shopped for weeks for a Spanish guitar that would be of sufficient quality to enable its owner to fall in love with it, the way we musicians always fall in love/hate with our instruments, but not so expensive as to send a message that could be misinterpreted. That is, I needed the minimal instrument that was actually a professional, playable, beautiful Spanish guitar. Also, it actually had to come from Spain (I thought that part a necessary indulgence.)

After the guitar arrived at my house, I spent two weeks playing it despite the problems that piano players have with guitars (finger-tip callouses, finger nail length) and my own horrible lack of practice. Tone, touch, tuning, balance, everything I knew about, I wrung out. I hoped, despite his being a much better guitarist than I would ever be (the piano is my thing), that I was advanced enough to make this decision. But it is scary. The relationship between instrument and musician is so completely personal! Buying one is like deciding to get married, and not for the first time, either.

I wish I could have delivered it, but another trek across the border had become impossible. So I wrote a short note of apology, put it with the guitar and sent it across. Then, I waited. Would it be good enough for him to love? Would he realize that I hadn't spent a fortune in money on it, but had spent a lot of effort on the choice? Would the message get through?

A few weeks after the wedding, a small vignette comes back to me. Rafael (father) and Jesus (uncle) had been seen examining and playing the guitar. The word came back that they looked at each other and asked, is this real?? Evidently, I had passed the first test! I knew that the "this" was ambiguous (Mexicans are nothing if not subtle). It could be about the guitar, it could be about the marriage. But at least I had inserted a big question mark into the system, something I desperately needed to do.


Much later, as we learned to know each other a little, I knew I had passed at least part of the test. For some reason (unspecified) Rafael couldn't bring some important legal documents to America for Ivonne to sign: Uncle Jesus would be bringing them across himself.

Holy shit. I was in. I don't know how la familia understand this marriage, but I think they think its real. It was a short meeting, my Spanglish wasn't really good enough yet to understand him, but when he reached out to physically touch me,  I knew an important milestone had been reached.

But there had to be another, and I did not know when or if that one would come. I just had to wait (espero should be sewn into the flag of Mexico, as it means both "I hope" and the imperative, "wait.") Was the guitar good enough?

Two weeks ago, Ivonne connected via teleconference with her kids in Tijuana and chatted. As they talked, I could hear Rafael in the background working with the guitar. He wasn't playing it. He was practicing! I heard him work at what a bluesman might call jazz licks, and I could hear him listening to the result and trying to make them better, more perfect. He didn't realize I was listening. But I listened. And the bond was there! The musician had an instrument!

So I broke in. I hear you playing, I say in Spanglish, and he responds by reverting to his show pieces, which he hadn't practiced. Malagueña, that sort of thing. He stopped partway through. I said, no, I heard you practicing earlier. You were practicing!

His simple response: gracias.

De nada, Señor! As it turns out, it was then that he remembered that he had been playing all morning and had completely forgotten to pick up one of the daughters at school two hours before. He rushed out to get her. Tears came to my eyes as I laughed. I'm in! Maybe they understand this marriage, maybe they don't, but the family knows it is real and honorable.

Soon, I hope, with the blessing of the Immigration and Naturalization Service, Homeland Security, La Migra, and g-d only knows whom else, the impregnable barriers to travel to Mexico will be torn down so that Ivonne and I can present ourselves to the thousands of aunts and uncles, grandmothers and grandfathers, cousins and nephews, as a couple. For the first time in a very long time, I belong to a family. This is a miracle.

MIRACLE TWO

I think I've written myself to exhaustion for the day. The next post will tell you all about miracle two. But, first, have a look at this chart:



After more than five months of unrelenting bad news, including the failure of bendamustine after the wedding, the numbers were spiking upward at a rate that meant I needed a miracle were I to make it much longer. Look at the red line, which is a measure of the number of plasma cells (and, therefore, malignant plasma cells) in the body. It doesn't take much imagination to see that if the trend continued upward at such a high velocity, there would be nothing to me but malignant plasma cells before too long. I would have no working immune system. My marrow would fail. And that would be that.

Then, the wholly unexpected miracle. Beyond my imagining. In fact, I was firmly convinced, on the basis of evidence from earlier this year, that I had passed a horrible milestone in the treatment of myeloma: I had become resistant to dexamethasone. But you'll have to wait a bit longer for that story. Suffice it to say for the first time in months, I have been given hope—legitimate, evidence-based permission to indulge in hope, and it is wonderful. Which is what I want to tell you about.

If I don't post soon (high-dose steroids make writing very difficult for me; I have only a day or two a week during which I can do it), may this holiday season be warm and loving for you, my gentle readers.


5 comments:

  1. Lonnie y Ivonne - Love has tremendous power... Willie Shakespeare said it over and over again better than I can... I know love can cure and the prayers of all those Mexican family members must be part of the healing that is going on... blessings and may your love manifest with a journey to visit all those relatives soon!!!

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  2. Perhaps the two are related and have had a synergistic effect? I only know thus is one of the most beautiful posts I have read since reading the books of Pat Conroy.
    I am so pleased at your numbers and your family connections.

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  3. Love's not Time's fool, though rosy lips and cheeks
    Within his bending sickle's compass come;
    Love alters not with his brief hours and weeks,
    But bears it out even to the edge of doom.

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  4. You're a rare individual Lonnie. My darling Lloyd is paying more attention to your story than anything else to do with Myeloma. Almost like an ostrich he is... "if I ignore it long enough it won't exist." But you, he pays attention to and listens closely when I read your writings. Thank you. Thank you for sharing with us. Thank you for allowing us to learn along with you. Thank you for the time and energy it takes you to write, time and energy you steal from your bride, perhaps. May this holiday season be one of many you two will share.
    bye4nowdotcom...
    eileen (loving caregiver to Lloyd) XXOO

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  5. Thanks for posting data points...I find this extremely helpful. I was diagnosed with MM on 8/8/08 at age 28....so I am going to be trending numbers for a while!

    Phil
    http://mmfordummies.blogspot.com

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